ArticleTherapeutic advances in respiratory disease
The diagnostic journey of pulmonary arterial hypertension patients: results from a multinational real-world survey.
Article in Therapeutic advances in respiratory disease. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT07131241 (Research on Dynamic Risk Prediction for Patients With Pulmonary Hypertension Based on Multimodal Data Fusion), which is not on this map. Cited by 11 papers, 1 of them a synthesis that pooled it.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Research on Dynamic Risk Prediction for Patients With Pulmonary Hypertension Based on Multimodal Data Fusion: A Prospective Observational Study
Who cites it
11 citing papers in PubMed, 1 synthesis or guideline pooled it, 10 citations in OpenAlex.
- Artificial intelligence in pulmonary hypertension: a systematic review.European journal of medical research · 2025Pooled it
- Navigating the Complexities of Pulmonary Hypertension Care: Unique Challenges in PAH Management.Pulmonary circulation · 2026Review
- Effect of Incident Pulmonary Arterial Hypertension on Risk of Newly-Diagnosed Mental Health Conditions.Pulmonary circulation · 2026Article
- Machine learning for prediction of key haemodynamic parameters in pulmonary arterial hypertension.European heart journal. Digital health · 2026Article
- Global disease burden of pulmonary arterial hypertension: patterns and inequality in 1990-2021, with projections to 2035.BMC public health · 2026Article
- The Pulmonary Hypertension Global Patient Survey: understanding the experiences and perspectives of patients.ERJ open research · 2025Article
- Assessing the Impact of Time to Diagnosis and Treatment for Patients With Pulmonary Arterial Hypertension.Pulmonary circulation · 2025Article
- Factors Associated with Referral to Expert Providers among Patients with Pulmonary Hypertension.Annals of the American Thoracic Society · 2025Article
- The Role of Psychological Distress on Health-Related Quality of Life, Fatigue, and Pain in Adults With Pulmonary Hypertension.Pulmonary circulation · 2025Article
- An ensemble learning model for detection of pulmonary hypertension using electrocardiogram, chest X-ray, and brain natriuretic peptide.European heart journal. Digital health · 2025Article
- Circulating biomarkers in pulmonary arterial hypertension: State-of-the-art review and future directions.JHLT open · 2024Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 3 institutions in 3 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPulmonary arterial hypertension (PAH) is a life-threatening, progressive disease often diagnosed late in its course.
objectivesTo present patient-reported data that were captured within a large, multinational, point-in-time survey of PAH-treating physicians and their patients to better understand the diagnostic journey.
designCross-sectional survey conducted in five European countries (EU5), Japan and the USA.
methodsPAH-treating pulmonologists, cardiologists, rheumatologists or internists (USA only) completed a patient record form (PRF) for the next four consecutive adult PAH patients they saw; these patients filled in a patient self-completion (PSC) form on an anonymous, voluntary basis. Our report focuses on patient data; data are from PSC forms unless stated otherwise.
resultsPhysician-reported PRFs and self-completed PSC forms were obtained for 1152 and 572 patients, respectively. Patients' mean (SD) age was 59.1 (14.0) years, 55.6% were female, and 57.3% had idiopathic PAH. Patient-reported data showed an average delay of 17.0 months between symptom onset and PAH diagnosis. This is longer than physicians estimated (13.8 months): this disparity may be partly due to the time taken by patients to consult a physician about their symptoms [9.6 months overall, longest in the USA (15.3 months)]. Most patients (71.6%) initially consulted primary care physicians about their symptoms and 76.4% of patients were referred to a specialist. Misdiagnoses occurred in 40.9% of patients [most frequent in the USA (51.3%), least common in Japan (27.6%)] and they saw an average of 2.9 physicians overall (3.5 in EU5
conclusionOur data suggest that diagnostic delay in PAH results from patient- and physician-related factors, which differ across regions and include lack of awareness of PAH on both sides. Development of better screening strategies may help address this barrier to timely PAH diagnosis.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.